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Newly Diagnosed Stage 1

My 54-year old dad had blood in his urine in September of 2020. At first he had simple cysts on his kidneys and they thought that was the cause. The symptoms continued to persist and so he underwent additional testing. A cystoscopy found a tumor in his bladder (CT scans and ultrasounds did not show it because of its location). At the end of March after his first TURBT, he was diagnosed with Stage 1 bladder cancer. It came very close to the muscle wall but fortunately was non-invasive. The doctor classified it as a high-grade. He has had two TURBTs in the past few weeks (one was to remove the tumor and the second was to make sure all the cancer cells were removed). He will be starting BCG in two weeks and will be doing it once a week for 6 weeks and then goes 3 months from his first treatment for a cystoscopy to see if the treatment worked. I don’t really know why I’m on here sharing all of this. I guess I’ve just tried to do a lot of research in the past few months that I have found is very contradicting and makes it hard to have confidence that my dad will live to see me get married and have kids. Right now he’s just been seeing a urologist who I guess has experience with bladder cancer. I’m just wondering if we should be seeing an oncologist or if the urologist is fine. This is the second urologist he has seen because the first (who found the simple cysts on his kidneys and the tumor via cystoscopy) had a really terrible bedside manner. Both doctors have been very calm about the diagnosis and act as if it’s not serious, but I find it hard to trust the doctors. I guess I’m just looking to hear from others out there who are going through this and can help me navigate supporting my dad in the most helpful way. Thanks.

  1. Hi , let me start off by saying that I am so sorry to hear about your father's diagnosis. He is so lucky to have you and I am grateful you found us. You are asking TERRIFIC questions.


    The difference between a urologist and oncologist is a bit tricky. In short, typically urologists diagnosis cancers but oncologists oversee the cancer treatments. This may vary depending on your health care team's capabilities and the diagnosis. Check out this article for more in-depth information about the two. https://bladdercancer.net/basics/urologist-oncologist


    Was your dad ever referred to an oncologist?


    - Jada (BladderCancer.net team member)

    1. Hi , He was not referred to an oncologist. His urologist has been the one who diagnosed, performed the TURBTs, and will be doing the treatments. I have been researching some hosptials that specialize in urologic cancers in the area, but they are farther than the hospital where my dad's treatments are going to be. I'm not sure when's the right time to get a second opinion from an oncologist/transfer to an oncologist. I also understand my dad preferring to get his treatments at a hospital 25 minutes away versus an hour and 15 minutes away. That being said, I am struggling with the thought that not getting an oncologist involved now could ultimately risk my dad's life. I definitely trust my dad's doctor and he obviously has experience with bladder cancer, I'm just wondering if its the best thing. Also, I don't want to delay his treatment schedule at all by having him look into and get an appointment with an oncologist. It's a whirlwind.

      1. @SarahK, two things on your reply to @JadaWalton. 1) What you're feeling and going through is common because so many people cannot fathom that an oncologist is not involved in the treatment. However, with bladder cancer, an oncologist is usually not involved until the cancer becomes muscle invasive. 2) You would be absolutely right in not wanting to delay treatments, BUT you can still seek a second opinion while he is still receiving his current treatments. The second opinion would be with a urologist though first, you would not go straight to an oncologist with bladder cancer. Also, in part, thanks to the pandemic, you can now request a second opinion consult via Telehealth options. Many offices are offering this service now. That might be something worthwhile to look into to put your mind at rest. ~Liz, Moderator

    2. Hi @SarahK. It is really common for someone who is receiving BCG treatments to only see a urologist or a uro-oncologists as the treatments they receive cannot be given in a regular oncologists office or chemo suite. Low-grade bladder cancer is pretty common and it does have a high recurrence rate. If the docs at the practice your father is going to have horrible bedside manner and they don't take the time to answer you and your father's questions, I would suggest seeking a second opinion from a uro-oncologist at a different practice in your area. You can go to BCAN.org for more information as well.

      I will link a few of our articles that may be helpful for you as well.

      https://bladdercancer.net/basics/urologist-oncologist

      https://bladdercancer.net/answers/frequently-asked-questions

      https://bladdercancer.net/basics/recurrence
      Good luck to both of you. ~Liz, Moderator

      1. thank you so much for all their information. This is super helpful and did help give me some comfort in knowing that seeing a urologist at this stage is okay.

    3. @SarahK Having a medical team who you feel confident in is essential. I was referred to a urological group and loved them. They took the time I needed and answered any questions I had. I had all of my treatments including RC/IC done by this group. They were very updated on BC and my surgeon was the first to use the robotic method for RC in the area so he was very experienced. 6 1/2 years later I am still doing great. I think you will figure out fairly quickly how confident you are in the doctors. My best to your father and family. You are all in my thoughts as you navigate this crummy journey. Linda ( moderator, BladderCancer.net team member)

      1. thank you so much for sharing your experience and kind words! Happy to hear you’re doing well. I think my dad and I are confident in his doctor now. He came recommended to us by someone we know who works in the area. So far news has been as good as can be for someone with this diagnosis, now we just have to wait and see how treatments go. Thank you so much again.

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